Tuesday, February 7, 2017

Assistive Technology Evaluation, IEP updates and Great Wolf Lodge!

I find myself in an interesting transition from regular blog updates about medical appointments and
improvements to a shift in less medical and more "normal life" posts.  Of course there are always the fun challenges in "normal life" like Reagan jumping off the monkey bars and thinking her foot was broken.  After waiting for a day and still having bruising and pain I took her for an x-ray and luckily it showed it wasn't broken.  And we have other normal kid issues like Reagan getting a wart on the bottom of her foot (we think from Tae Kwon Do).  We're running the course of soaking, grinding, medicating and taping.  We are on week two of treatment and I'm hoping it will resolve by next week.  She's being a good sport about it, but it is one more thing to manage.  

We did hear back from Columbia that Reagan is not a candidate for the NY program unfortunately.  Apparently they include electrical stimulation as part of therapy (which we've done before) and they exclude children with epilepsy.  I was disappointed to hear this, but at least it makes the decisions for us I guess.  They recommended another program in NY but it includes constraint so I'm not sure we will consider it.  We have also schedule her next EEG for April.  This is a tough decision for us - as you may remember, there may be a point that we decide to try weaning her from the medication to see if she could be seizure free non-medicated.  Unfortunately we don't expect to have a clean EEG that will help us know if that will be possible so it will be little bit of Russian roulette.  We will repeat the test this year and see how the results look and go from there.

I'm still trying working with Cole on the contacts.  Every week I let him hold the lens while I empty the solution and add new.  We talk about how it feels and what it would be like on his eye.  He's still not convinced he wants to try it so we're waiting for now.  I'm starting to get nervous it will dry out but I also don't want to make another appointment and have him refuse it again.  So it's just a matter of time and patience...neither of which I have in extra supply.

We did have an amendment meeting for Cole's IEP.  The school decided he needs a little more support in the classroom to complete his work so they added more time.  They also modified his goals slightly.  We had a goal for self advocacy and they think he's doing GREAT at this so we've removed it. That's great to hear!  We also got the results of the Assistive Technology Evaluation.  This evaluation looks at how he is using technology and what accommodations may be necessary.  It outlined several recommendations including 1) a simplified login, 2) differentiated icon shortcuts, 3) magnification software, and 4) modified positioning at the computer (foot rest/chair for better alignment of the monitor and mouse).  Although I'm happy these accommodations are being made, I guess I was hoping for some big revelation from the evaluation and we didn't get that so I'm a little disappointed.  I'm sure it was in my own mind.  I find there are many times on this journey that I've expected black and white and the world is nothing but grey.  Like Reagan's EEG - I expected it would tell us if she's having seizures.  If she is, we keep the meds.  If she's not, keep the meds.  Black and white.  But "spikes" don't always mean seizures.  One font type, one font size, on white, on pink, above, or below.  He can see the crucifix hanging above the alter when we sit in the front pew but not the priest. I wish for one day I could see through his eyes so I felt like I was advocating for what he needed.

It was also suggested in the IEP meeting that Cole have a Functional Vision Assessment.  This will determine how to present information to optimize what he can see.  For example, what font size is best based on things like background color etcetera.  It will also determine if they think we should consider braille.  Based on feedback from the Developmental Pediatrician, I reached out to the Department of the Blind and they have agreed to participate in this evaluation with his Teacher of the Visually Impaired.  It will be done next week so I'm hopeful we will have results in the next month. I will be very curious to see what they say.

And to end on a fun note, two pictures from our fun trip to Great Wolf Lodge!  A friend and I decided for the teacher work days to take the kids for one night.  They had an absolute blast.  Reagan is now tall enough to do all the rides and she did!  Cole did all the rides except the Tornado which he just wasn't tall enough for. And let me tell you - I screamed all the way down! It was perfect for Reagan and Hailey to do rides together and Cole and Brayden could do rides together.  We definitely want to go back again soon!

Thursday, January 19, 2017

Nystagmus Surgery Results and HABIT Camp in NYC

It's a new year and with it will be GOOD THINGS!  I"m looking forward to seeing what this year has in store for the Bischoff's.  I plan to continue to streamline our doctor's appointments and reduce where possible.  We've decided not to go back to the physiatrist at this point and have discontinued the night brace.  So far we haven't seen an increase in falls or tension so that's a good sign.

We did go back to OH in December to visit Dr. Hertle and have repeat testing done for Cole's eyes.  I received the report of findings and the statistical results look amazing!  I have included two diagrams - the one in white shows the Electronic Eye Movement Recording (EMR) from before the surgery.  This shows how much his eyes are moving at any given moment.  The image in black is the EMR after surgery.  Although I don't have a baseline, it's amazing how much these results have improved.  Obviously we can see that difference without data, but it's always nice to have quantifiable
information to support suspicion.

Additionally, his eye exam indicates he went from 20/500 in the right to 20/250 and from 20/300 in the left to 20/200 and from 20/300 in both to 20/125 in both!  Someone is considered legally blind at 20/200.  The only challenge for Cole is that his lenses don't correct this vision.  So whereas some people with 20/125 they are corrected much closer to 20/20 with lenses.  That isn't the case for Cole.  Regardless, we are SO happy to see the surgery was a success!

In other news, I recently submitted an application to have Reagan participate in a bimanual therapy camp at Columbia University this summer.  They are only running the research for two more years and there aren't many programs like this.  It was SO nice to not have 4 weeks of intense therapy last summer so the kids could enjoy some camps, but we have to research this options.  It's called HABIT - Hand-Arm Bimanual Intensive Therapy.  I'm very apprehensive about living in NYC for four weeks, but I really think this could be a good program for Reagan.  We will see if our application is accepted. I love the city, but I can only imagine how expensive it will be and how hard it will be to keep Cole entertained.  Unfortunately, upon cursory investigation, the Ronald McDonald House in NYC is strictly for cancer patients.  I will have to do a little research on an airBNB or something like that if we are accepted.

Anyway, just a quick update this time, but no news is good news right?!

Sunday, January 1, 2017

New Year's Eve in Hershey and That's a Wrap for 2016!

After a fun filled Christmas but almost a full week of work for Johnny we decided to head to Hershey to celebrate New Year's Eve.  We headed out late morning and decided to stop at the Bass Pro Shop on the way there. We don't ever really NEED anything, but it's always fun to look at the taxidermy animals and huge fish tank.  After dreaming about boats and looking around for a while we headed the rest of the way to the hotel.  Unfortunately our room wasn't ready so we killed some time at the outlets and then went to check-in.  We haven't stayed at the Hotel Hershey since the kids were born, but it did not disappoint! It was built in 1933 and has been expanded and renovated several times over the years.  We had about an hour to relax before we headed to Giant Center for a Hershey Bears Hockey game.  It's tradition for us to go up for a game, but we usually go earlier in December.  Given Johnny's school schedule we waited since he didn't have classes on New Year's Eve.  We had a great time at the game despite a loss and even ran into some friends who live right up the street from us!

After the game we decided to head to the Downtown Hershey block party.  They had a band playing and they raise a huge Hershey kiss at midnight followed by fireworks.  They had many different food vendors and the Hershey Kiss Car.  And of course, the characters from Hershey Park were there including the Hershey bar and the Kitkat.  We also found a beautiful Methodist church that was serving hot cocoa and cookies in their basement.  Although it wasn't terribly cold, the kids were a little chilly, and there wasn't quite enough to do to entertain the kids for the three hours we had until midnight so we decided to head back to the hotel for the dance party.

We got there about 9:30pm and the kids were already starting to seem tired.  But the minute we walked into the room they both perked up and had such a fun time.  Cole was a dancing machine!  HE had so much fun with the loud music, light up dance floor and dancing with the Hershey bar and Kitkat.  Reagan danced too, but she also had fun with all the light up wands, balloons and necklaces.  They both lasted much longer than expected, but we decided to head up to our room about 11pm.

Since we made it so close to midnight we decided to order pizza and popcorn to the room and watch the ball drop.  The kids had a sword fight with their light up swords from downtown.  They've never stayed up that late before and thought it was really fun.  Cole fell asleep just before the ball drop but Reagan stayed awake!  We then watched some of the downtown fireworks from our window before falling asleep.

Surprisingly the kids were wide awake by 8am and begging to go to the pool.  So we headed down for a quick swim before breakfast.  The hotel had robes in the rooms and the pool area was very warm so it was a nice morning.  Then we all took showers, packed up and headed to The Circular for breakfast.  I had been thinking about this breakfast for days!  Unfortunately because it was New Years Day (and more than usual attendance) they didn't have their usual omelet and Belgian waffle stations.  Although I was disappointed, the buffet did not disappoint!  It's such a beautiful room with stained glass windows and beautiful views out to the terrace.

It was an amazing and fun filled 24 hours that unfortunately had to come to an end. But we had a great time and will definitely be back!  It was a great way to wrap up 2016.  It was a year with no hospitalizations so we have a lot to celebrate!  I also made a concerted effort to reduce the amount of time we spent in doctor's offices.  So we stopped seeing a few of the specialists and spaced out some of the others.  Although we had to add a few new ones, overall it felt like we had less appointments.  Last year we had 32 appointments and 101 therapy appointments. This year we had 25 doctor appointments, one surgery and about 70 therapy appointments (decreased from last year because we didn't have constraint camp and Reagan didn't get off the wait list for therapy until halfway through the year).  Overall I call this year a success!!  Bring on 2017!

Thursday, December 29, 2016

Christmas 2016

The kids were very excited about Christmas this year.  I always find it interesting that there are so many elements of parenting that are not as I expected and this is one of them.  I expected kids to "get" Santa much earlier.  Don't get me wrong, they have been excited about Christmas for years, but I don't think it was until last year that they really started to think about Santa ahead of Christmas - so we'll call that age 5. Then this year I've already heard "that Santa is not real" and that's age 7.  One thing that is different for my kids than for me growing up is that they see Santa in SO many places, but not always top quality Santa's which means they don't have real beards and the kids clue in that they must not be THE Santa.  Which, of course, can be explained because Santa has so many helpers, but still.  The questions begin.  Before kids I always thought the magic lasted for so long. I'm hoping we can hold on to it for another few years.  Hearing the squeals when they saw presents under the tree and realized Santa had come was so fun to watch.

Reagan only had a few items on her wish list.  The first was Zoomer Kitty, which was actually on her list from last year but Santa didn't bring it.  She was excited that you could get the kitty in pink this year (only black last year).  It is a high tech toy that meows, purrs, follows you and plays with a ball.  She also wanted the American Girl doll, Leah.  She's a beautiful doll and a good addition to the family.  She also really wanted Littlest Pet Snuggles Tiara.  This was a gift she has wanted since her birthday but again, something she waited for patiently. It's a dog that opens and closes its eyes if you rub his nose.  It snuggles with you when you hold it and it makes noises.  Her most desired toy was CHiP, which is a robotic dog that is the next generation of Zoomer Kitty.  Unfortunately she did not receive this toy, but perhaps one day :)

There was also a very popular toy (and hard to find) called a Hatchimal that she was hoping Santa would bring her.  Luckily Santa found one for her and one for her brother.  It is an egg that only hatches when you give it love and attention.  The animal inside rotates and pecks the egg until it cracks open.  There are five species of these Hatchimals and you don't know exactly what color you will get until it hatches.  Reagan and Cole both got the Daggle which is somewhat like a dragon.  Once born, it plays the happy birthday song but is only an infant.  The more you play with it, the faster it grows up (through toddler to adulthood).  By the end second day it had learned to repeat words.  Reagan taught hers to say "I love you."  It has activity appropriate responses.  For example, if you rub it's head it purrs. If you throw it in the air it says, "weee."  So far they are having a lot of fun with it.

Cole had a much simpler list that only included "a car that I can fit in to drive really fast."  Unfortunately Santa did not bring him the toy he wanted.  I reminded him that you have to be 16 to drive a car like that, but he still couldn't think of anything else he wanted for Christmas.  He is having fun with his Hatchimal, though.  He also loves clothes with the Nike swoosh so he got two new sweatshirts and a pair of pants.  He also got a superman costume, scrabble game, a robot building kit (like Legos) and a new iPad. His last one was about 5 years old and after the screen shattered it never worked right again even though the screen was replaced). The kids big gift from mom and dad was an air hockey table. They were very surprised and have had a lot of fun with it! Luckily it keeps score so there will be no fighting about who is winning :)

Following tradition, we went to Grandma and Grandpa's for brunch.  Reagan received a Nutcracker music box and Cole received a lap harp which he didn't want to put down! He is excited about using it during his music class.  After visiting for a couple hours we headed home and hosted Johnny's family at our house.  It was so fun to be able to use all the beautiful Christmas dishes we received for our wedding.  Nana and Pop came in addition to his sister Vicki's family.  We had a fun time catching up.  Reagan received a Lego set and Cole got a remote control race car. They also got gift cards towards new shoes. Unfortunately with the craziness of hosting I didn't take one picture!  Not to mention I didn't get a single picture of Johnny and me all day.  Terrible!

I hope that one day the kids will enjoy reading this blog (I print it every year) and remember the types of things they wanted for Christmas.  I find most of my Christmas's as a kid are a distant memory.  I hope that documenting it for them will help them remember years' past.  In 2004 I started a scrapbook to remember things from my grandmother.  I took pictures of everything she had given me and I sent her paper precut to fit the pages to write a story about each item she had given me.  Then I put her hand written note with the photo in the scrapbook.  I truly cherish having that book and love that my children will know that history.  A few of my favorite things from her include a very old trunk that she thinks came with her family on a boat from Germany to the United States (the lock is dated 1817), a cookie jar she remembers getting for her birthday in 1950, and salt and pepper shakers from a collection her mother had with over 300 sets!  So many things in our world today are expendable so we don't keep things like we used to. But I often look back at my own photo books and blogs and remember things my children love.  I can't believe in just a few short days we will be wrapping up another year!  It really is true that time seems to go faster as I get older...